Newcomer to AP – need encouragement

[Rose]

I started on 100mg everyday at the beginning. After one month was able to get out of bed in morning without the morning stiffness. My Rheumatologist I was seeing retired a couple of years ago, but his partner is seeing me; however, he really doesn’t believe in the AP method but he sees it works for me and so goes along with it. About six months into the AP therapy I changed to the MWF. I was on Sulfasalazine for five years. And at the beginning of AP I continued to take the Sulfasalazine on the days I did not take the Minocin. Then finally I was able to quit that about two years into taking both the two medicines. That was a good thing as the Sulfasalazine was really messing up my stomach. It is a combination of Aspirin and Sulfa.

[aristontyler]

Ok, we need more help. Due to the unbearable reaction (Herx?), Danniele decided to get off of the Mino to let it wash out and try again at a lower dose. In the transcript Maz sent, Dr. Brown says that you have to stop and get the inflammation down because the antibiotics can’t get to the mycoplasmas if there is too much inflamation. Well, when she stopped, the pain got worse. She has been off a week, and the inflammation is not subsiding; it’s as if her disease just keeps progressing aggressively.

I guess she is going to go ahead and restart the Mino anyway, because we don’t know what else to do. Has anyone else experienced this? Maybe we shouldn’t have stopped and the symptoms worsened as a result of ending treatment – but the treatment itself had caused such a flare that we were sure it was the herx…

[JohnnyMax]

@aristontyler wrote:

Ok, we need more help. Due to the unbearable reaction (Herx?), Danniele decided to get off of the Mino to let it wash out and try again at a lower dose. In the transcript Maz sent, Dr. Brown says that you have to stop and get the inflammation down because the antibiotics can’t get to the mycoplasmas if there is too much inflamation. Well, when she stopped, the pain got worse. She has been off a week, and the inflammation is not subsiding; it’s as if her disease just keeps progressing aggressively.

I guess she is going to go ahead and restart the Mino anyway, because we don’t know what else to do. Has anyone else experienced this? Maybe we shouldn’t have stopped and the symptoms worsened as a result of ending treatment – but the treatment itself had caused such a flare that we were sure it was the herx…

What are you doing to get the inflammation down? Has you doctor given you any meds. Even Brown advocated the use of low dose steroids, ie prednisone. She may have to do that since taking minocycline with a lot of inflammation will make it not very effective, since it will not be able to penetrate through the inflammation very well. At the very least get a script from your doctor for something like meloxicam, it is very good NSAID, is very gut friendly and since it is generic, it is cheap too. Either that or ask him about a Medrol Dose Pak (6 day program of steroids), also cheap, that will cut the inflammation down to size pretty quick. You may have to stay on some meds on a continuing basis when you get back on AP to keep the inflammation down, possibly some antihistamines also, which was used by Brown also.

John

PS.. why does not your wife come online, doesn’t she like us?

[aristontyler]

Hey John, she does read these posts when she can. She is unable to type due to the painful swelling in her hands – her knuckles are dimples. She has a prescription for prednisone, but she worked a long time to wean from it – which was VERY hard. She is reluctant to use it again, but she did take one last night (5mg). I informed her of Dr. Brown’s comments regarding inflammation, but I leave the decision to her. Dr. Brown also suggested a daily regimen of NSAIDs such as Motrin, so she’ll probably at least go with that. She has tried so many things and been through so much that I don’t really push her with anything.

We had not heard of meloxicam, so we’ll look into that, too. She is starting back with a pulsed 100mg on MWF tonight, along with antihistamines, which we didn’t know about before. Hopefully we can get the inflammation under control and see some improvement with time.

I can’t say enough times how much we appreciate all the information and support here.

[JohnnyMax]

@aristontyler wrote:

Hey John, she does read these posts when she can. She is unable to type due to the painful swelling in her hands – her knuckles are dimples. She has a prescription for prednisone, but she worked a long time to wean from it – which was VERY hard. She is reluctant to use it again, but she did take one last night (5mg). I informed her of Dr. Brown’s comments regarding inflammation, but I leave the decision to her. Dr. Brown also suggested a daily regimen of NSAIDs such as Motrin, so she’ll probably at least go with that. She has tried so many things and been through so much that I don’t really push her with anything.

We had not heard of meloxicam, so we’ll look into that, too. She is starting back with a pulsed 100mg on MWF tonight, along with antihistamines, which we didn’t know about before. Hopefully we can get the inflammation under control and see some improvement with time.

I can’t say enough times how much we appreciate all the information and support here.

From what you described about her hands, sounds like the inflammation is bad. I would be cautious on the minocycline dose, even 100mg might be too high, ask your doctor about starting off lower, maybe 50mg on MWF. Some people on this board had a tough time with the 100mg MWF and cut it down to half and did much better. With RA, less is more sometimes. In addition to whatever prescription she is given for inflammation consider using a product called 5-Loxin, it is made by Life Extension, not expensive at all. It is a highly concentrated extract of Boswellia that is fantastic for inflammation and will not hurt the gut at all. I and my dogs use it and it is better than anything else on the market. Many will say curcumin is good, but the problem with that is bad absorption, so its wasted, but the 5-Loxin is totally absorbable. There have been clinical trials on it,check the web. The main thing is to get the inflammation down so she can have some type of functionality.

John

[lynnie_sydney]

Some people on this board had a tough time with the 100mg MWF and cut it down to half and did much better. With RA, less is more sometimes.

…..and just to further support what John has said.
There have been people who have found even 50mg too high to start with and have started on 25mg on 2 or even 1 day a week and then gradually built from there. ‘Low and slow’ is the maxim for a lot of RA sufferers

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

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